Date: Thu, 17 Nov 1994 00:38:18 -0600 (CST)
From: Kevyn Jacobs
FROM THE KANSAS STATE COLLEGIAN
KANSAS STATE UNIVERSITY
WEDNESDAY, NOVEMBER 16, 1994
REPRINTED WITH PERMISSION
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Aids: Loving, Losing
Story by CHRISTI WRIGHT
Collegian
Elizabeth is a 27-year-old member of the Manhattan community, and she has
AIDS. She recently lost her child to the fatal disease.
Elizabeth found out that she had AIDS when her baby son was about three
months old. Even though she tested negative during her pregnancy, she came
in contact with the disease sometime before the child was born.
"I heard about AIDS on TV, and I thought I should go and get tested. I
came here (Riley County Heath Department) for the test, and I didn't think
that I had it," Elizabeth said.
She said she didn't really worry about the disease until her son started
showing the symptoms.
"The first thing wrong was my son started getting ear infections. The only
treatment available for him was two or three hours away. No one in this
area knew how to deal with it," she said.
The ear infections put Elizabeth's son in the hospital for three days, and
he later underwent ear-surgery. By this point, over-the-counter drugs were
not strong enough to help the baby.
Except for the occasional cold, he was healthy until he was about 1 year old.
"He got pneumonia when he was about 1. He started getting sick, and he
spent 24 hours in the hospital here, then went by ambulance to the
specialists in Kansas City because he didn't respond to the treatment or
medicine," Elizabeth said.
The baby spent 26 days in the hospital and underwent every kind of testing
possible.
"They ran every test known to man on him. They did a lung biopsy, spinal
tap, bone marrow tests, blood work, five blood transfusions and four
platelets," she said.
During this hospital visit, the doctors also put a Hickman in the baby's
chest. A Hickman is an IV that is hooked into the main heart artery that
comes out into a double port. He also got a feeding tube because he was
too weak to eat on his own.
When Elizabeth finally got to bring her baby home, Homecare nurses had to
visit three times a week to help her care for him. Few people had the
knowledge and training to take care of the baby.
"If I needed to go somewhere, I had to plan three days in advance to
leave," she said.
The baby was fed a high-calorie formula to keep his weight up. For his
age, he was an average-sized baby. "He was even a little chunkier than
normal," she said.
Most of the time, the baby didn't look sick. "I hid the fact he was sick
for a long time. He was a very active baby, and people couldn't tell. He
even learned to walk holding on to an IV pole," Elizabeth said.
Since the baby had no immune system, his life was at risk from almost
anything.
"I was risking his life just by taking him to Wal-Mart with me," Elizabeth
said.
During the holidays, Elizabeth took the baby home, which was about a
five-hour drive from Manhattan.
"He got pneumonia again, and we took him to the emergency room there at 10
p.m., and they needed the past x-rays of him and didn't know how to treat
him. We were told to bring the baby to his regular doctor, so we drove all
the way back here," she said.
He was on IVs for a week, and Homecare nurses had to visit everyday to
help with the IV and give him medicine. Elizabeth was told to take the
baby to Kansas City because the facilities there were better equipped to
care for a baby with AIDS.
"At the hospital there, they ran every test known, again to determine what
was wrong with him," she said.
Most of the test results were negative, but the baby was treated for
infections, even if he did not test positive. He also received another
spinal tap, bone marrow testing, 10 more blood transfusions and eight more
platelets.
The baby's platelets were too low. Platelets prevent a person from
bleeding to death internally, so he could not undergo any surgeries.
At that point, the baby had at least three infections and was at risk of
bleeding to death. With all these problems and no immune system to fight
off infection, the baby couldn't hang on any longer.
He bled to death as a result of AIDS. The baby was known to have three or
so infections, but he didn't die from pneumonia.
Elizabeth fought to keep her son alive and is now fighting her own battle
for survival.
"Last December, I was diagnosed as having full-blown AIDS," Elizabeth
said. "The doctors gave me three years to live.
"I am more tired than usual, and I'm on mega-medications. I sleep a lot
and go to the doctor about twice a month."
One thing AIDS patients face in everyday life is loss. "I can't further my
education, work, own my own home or anything of any value," Elizabeth
said. "I lost my friends, too."
Elizabeth has also been the victim of vandalism and personal threats.
"My car has been vandalized, and my house has been robbed," she said. "I
have been threatened verbally and over the phone, and the Health
Department gets threats, too."
There is a prejudice against people with AIDS, and people have gone as far
as to say she should wear a sign around her neck, or she should just shoot
herself.
Elizabeth is currently visiting groups and sharing her story of her bout
with AIDS.
"I feel well enough to visit about three groups a week teaching and
promoting AIDS prevention," Elizabeth said.
In almost one year, she has spoken to about 3,000 people. Elizabeth and
the Health Department have talked to church groups, girl scouts, classes
and even beauty parlors.
Elizabeth and the Health Department will talk to just about any group, but
there is always security present, even though they aren't always visible.
Elizabeth is an active member of the Kansas AIDS Networking Project and
Manhattan AIDS Projects. She also went to a conference last summer in
Washington D.C.
Elizabeth is very susceptible to infections and takes risks by visiting
with groups every week.
"I just tell them that I am more at risk from them than they are to me,"
Elizabeth said. "People say I should be afraid of dying, but sometimes I'm
afraid to be alive."
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Copyright 1994, Student Publications Inc. All rights reserved.
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